Time, trust and transparency keys to minority biospecimen collection

UC Davis leads study on strategies to even the clinical research playing field

Blood and tumor specimen collection from cancer patients is critical to research into new, more personally targeted therapies. But biospecimen collection among diverse populations lags far behind that of whites.

In work aimed at boosting these collection rates, researchers at UC Davis and collaborators at three other institutions found that Asian, African and Hispanic Americans are open to donating specimens for research when clinicians and scientists adopt the right strategies.

Based on an exploration of barriers to biospecimen collection among ethnic and racial minority groups, they recommended three fundamental strategies for researchers:

Commit to investing the time necessary to developing community relationships

Earn community trust

Be transparent, use clear communication and culturally and contextually appropriate education

The findings were published online this week in the Journal of Community Genetics in an article entitled "Engaging Diverse Communities in Biospecimen Donation for Cancer Research." It is the first such research paper to analyze cognitive, communication and sociocultural factors affecting biospecimen donation among diverse racial and ethnic populations. The researchers investigated these dynamics in three different parts of the United States.

“Time, trust and transparency are essential to success in biospecimen collection among these groups,” said Julie Dang, administrative core director at Asian American Network for Cancer Awareness and Training, headquartered at the UC Davis Comprehensive Cancer Center, and lead author of the article.

“You can’t just go in and ask patients for biospecimens without building trust, and you can only do that by spending a lot of time with them, getting to know them, and having a vested interest in understanding what the community wants and where they are coming from,” she said.

Collection and banking biospecimens from all groups is critical because clinical research increasingly relies on the availability of appropriate genetic materials for the development of new, more targeted cancer therapies, the authors write. When underrepresented, racial and ethnic minority patients cannot equally benefit from clinical research breakthroughs.

“To move closer to a cure for cancer it is vitally important to have a diverse sampling of biospecimens available to researchers,” said Cathy Meade, a senior member of faculty research in the Division of Population Science at Moffitt Cancer Center in Tampa Bay, Florida, and a study collaborator, who worked with a researcher at Jiann-Ping Hsu College of Public Health at Georgia Southern University. “That is why we are committed to studying differing patient beliefs and attitudes towards biobanking. Understanding factors that motivate or hinder patients from providing a sample could help doctors and researchers improve the process.”

For their studies, collaborators collected data using similar methods, which involved community advisory boards, interviews and focus groups. Data interpretation was conducted within a cross-cultural community framework to identify patterns among community groups and sources of divergence among the findings by geographic, racial or ethnic group.

Cultural differences, language barriers, distrust and nuanced perceptions of the meaning of biospecimens all can hamper efforts to get patients to donate blood or tissue samples for research. The researchers found differences – often very subtle – in the reasons for a lack of trust in medical research efforts.

African Americans in Western New York, for example, expressed concerns about being “guinea pigs,” and Hmong and Vietnamese participants in California worried that specimens could be used to cause ill will against them, while white participants in Western New York expressed suspicion of exploitation by corporations such as large pharmaceutical companies.

Similarly, the groups differed only slightly in their comments about the importance of biospecimen donation. Latinos in Tampa Bay thought collection of specimens would “better humanity” or improve the health of family members or future generations. Chinese respondents reported that research could help others save lives, while white participants discussed the role of research as helping to “reduce suffering.”

“For a long time there's been an assumption that people from diverse and underserved communities approach all medical research with skepticism and distrust, but in all three study sites we found great openness to the idea,” said co-author Elisa M. Rodriguez, assistant professor of oncology in the Office of Cancer Health Disparities Research and director of the Community Engagement Resource within the Center for Personalized Medicine at Roswell Park Cancer Institute in Western New York.

“Once people out in the community understand what biospecimen donation is and the role it plays in cancer research,” she continued, “they're more willing to consider participating in studies. But we have to give clear explanations of the process and use examples that are relevant for those communities.”

Funding for the study was provided in part through cooperative agreement grants to the collaborating institutions from the National Cancer Institute’s Center to Reduce Cancer Health Disparities, including 3U01CA114640-05S4, 1U54 CA153499, U54 CA153499-01S1, 1U54 153499-02S1, 5 U54 CA153509-03, 3 U01 CA114627-05S2, U54CA153598, R03HD059556, and P30CA016056-27.

UC Davis Comprehensive Cancer CenterUC Davis Comprehensive Cancer Center is the only National Cancer Institute-designated center serving the Central Valley and inland Northern California, a region of more than 6 million people. Its specialists provide compassionate, comprehensive care for more than 10,000 adults and children every year, and access to more than 150 clinical trials at any given time. Its innovative research program engages more than 280 scientists at UC Davis, Lawrence Livermore National Laboratory and Jackson Laboratory (JAX West), whose scientific partnerships advance discovery of new tools to diagnose and treat cancer. Through the Cancer Care Network, UC Davis collaborates with a number of hospitals and clinical centers throughout the Central Valley and Northern California regions to offer the latest cancer care. Its community-based outreach and education programs address disparities in cancer outcomes across diverse populations. For more information, visit cancer.ucdavis.edu.